Building my life after the devastating effects of Necrotizing Fasciitis
(The Flesh Eating Bacteria)

Monday, March 28, 2016

Sweet potato salad, with a side of relapse

It took a long time before my dear friend Miriam and I could find a time to have a "date" together. Life is so busy, it's a rare opportunity when it comes around.

We went to a cafe in a mall. It was *packed*... something we didn't expect. It was the day before the fast of Esther (two days before Purim), and all the high school kids were dressed up in costumes, as is the custom for Purim, and that mall was apparently the place to be seen. And what a scene it was... cupids, zombies (complete with fake blood), pirates, prisoners, an eerie fellow wearing a mask of "The Scream" (by Edvard Munch), Goldilocks, and yes, even street walkers (how do their mothers let them out of the house like that??!!). I'm telling you, it was strange, mostly because, even though Miriam and I both are raising teenagers, we didn't know that this is the thing to do. Our kids didn't do the "hang out in costume at the mall" thing. It caught us off-guard. And it was so *loud*! But since our time together is so limited, we decided to take a table at the cafe anyway (instead of relocating), and order our lunch. At one point I got a call from Robert, and I actually had to go into the elevator corridor so I could hear him, it was that loud.

Near the end of our meal, we suddenly see and hear costumed teens at the top of the nearby escalator running and screaming. We had no idea what was going on. I thought it was some sort of Purim prank (weird things happen all over this country around Purim, expect the unexpected). But, like an ink spill, people all over the mall were also beginning to panic and head for the exits. Rumors using the word "terrorist" could be heard, yet nobody around us knew what was going on. We obviously got up and headed for an exit as well. I instinctively reached out for Miriam's hand, I was getting a bit freaked out. Holding hands, we decided to wait for the elevator (where minutes before I was calmly talking to Robert on the phone), because everyone was crowding the escalator.

As we waited for the elevator, people were scattering all over; some panicked, some bewildered, most were worried. The absolute strangest thing? That these were also all sizes and forms of people in costumes... there were teens running around with fake blood on them, a guy dressed all in black holding a long knife/sword thing, and girl/hookers. The only word to describe it is SURREAL.
Was there a knifing? Is the terrorist running free? Is anyone hurt? Nobody knew anything.
While waiting for the elevator, we heard what, to me, sounded like a gun shot. I lived in Manhattan on the edge of Harlem in 1991, I knew what gun shots sounded like.

We were all alarmed. Well, Miriam was pretty calm. I wouldn't let go of her hand, though.

Eventually, within 10 minutes, the entire contents of the crowded mall spilled out into the parking lot. On the way out I asked the security guard if he had any information, and he also didn't.
People (teens mostly) were crying, shocked, and traumatized out there waiting around in the parking lot. And all the costumes and elaborately made-up faces.... it was like out of a Fellini movie. I, personally wondered if a terrorist with a knife was going to run out in our direction at any moment.

Miriam asked me if I'm OK. I said yeah.
A few minutes later I said "...actually, Mir? I'm not so OK".

We made our way to the car amidst the sounds sirens, police on their way. We didn't see an ambulance, so we hoped that was a good sign.

We got into my car, and I kept pressing the code pad on the dashboard with the code I was sure was right. I have driven that car for four years, I *know* the code. But in my shock, I didn't remember it. I called Robert to ask him the code. He was surprised, but I didn't want to startle him and tell him what was going on (and we still didn't really know what was going on). He told me the code, and we weaved our way past police cars to get out of the overloaded parking lot, to the exit.

As we exited, we heard two huge booms.
Me to Miriam: "did you hear that"?
Miriam: "yes. Let's not jump to conclusions..."

At home, I told Robert about it all via texting with him (he was at work), but we still didn't know what, if anything happened. There were no news reports yet. I talked about it a lot in those next hours. I told my kids what had happened, I was definitely in a state of high alert, possibly a little shock in there, too.

A while later, Robert texted me to ask if I am OK, if I felt that I am over it. I wrote "yup", with no hesitation. By that time we pretty much knew that the gun shot sound was a firecracker that someone set off in the mall (very common on Purim), and that also two teens were having some sort of an altercation, maybe a knife was pulled, maybe not. The news reports were contradictory. What was clear was that nobody was hurt, and there was no terrorist, thank Gd.

I was over it.

The next day, I started feeling that cotton-heady feeling, dizzy, and like my limbs were all heavy. Incredible fatigue. It was a fast day, but after about one in the afternoon, it was clear to me that I had to break my fast. I did so, and I had hoped it would make me feel better, but it really didn't help much.

We went to the synagogue for the night of Purim. I felt awful, physically, but I got there. It was the first time I didn't go in costume... I had no energy for that.

The next day, the big, busy day of Purim, my limbs felt like anvils. I was so weak, I felt faint just walking to and from the bathroom. I didn't leave my bedroom all day, even though there was Purim going on. That was the day I wrote my last post- the one called "I'm getting lost". I didn't get to any Purim festivities, including our traditional community feast, which I have *never* missed. It was truly sad for me, and for my family to have to separate. I just could not move. Oh, and I had a migraine come for five hours, then go, in the middle of the day, as well. It 'went' because I used some heavy medicines to take myself out of my misery.

Friday was the same. A tremendously busy day, but I couldn't do anything. I did get out of my bedroom, but again, my limbs felt heavy, and I was so weak that my joints actually hurt coming down the stairs. That *never* happens. It was so uncharacteristic. I was convinced that something big and bad was wrong.
Thankfully for us that our guests for Shabbat actually canceled, and we (Robert) had less cooking to do.

Shabbat came, and by afternoon I was feeling much better. I went out on a walk with the kids, actually, which felt awesome, like I was breathing for the first time in three days. And just like that, I was feeling normal again.

So, what is the explanation of all this?

We'll never be sure, but, on Friday I had a conversation with my wise and intuitive sister-in-law, Rivka. She already knew the story of what had happened in the mall (as did anyone else who read my Facebook update that day). She suggested that it was a relapse of the PTSD, triggered by the mall incident. Even though, intellectually, I knew that there was no terrorist attack, for a long while there it felt like it, and that is all your parasympathetic nervous system needs to "know". PTSD is like an instinct, once a person has had it, it comes back when the primitive part of the brain stem gets activated by trauma.

What strengthens this hypothesis more is that the day after my conversation with Rivka was when I started to feel the fog lift. What I know from physical responses to emotional triggers (a whole book in and of itself) is that once the person names the emotional problem that triggered the physical response, the physical response no longer has the need to be there. In my history, I have had a certain chronic back pain, and I know that it happens when a certain type of stress and trauma enters my world. When I feel it, I "tell" myself the message like this: "I know what you are, back pain, I don't need to pay attention to you. I get what is going on here, this [subject] is an issue these days". And, it always goes away within a few days. If you want to learn more about this issue of physical pain being a manifestation of emotional triggers, I highly recommend the book "Mind Over Back Pain" by Dr. John Sarno. I read it in 1990, and it changed my life.

In 2007, about six months after I had NF, is when I got hit hard with PTSD. I spent three weeks in the Be'er Sheva psychiatric hospital because of it... it was *that* bad.

So it is quite possible that what happened last week after the mall incident was a relapse of the PTSD. All the symptoms lined up, hit me over the head, and then went away.

I am constantly taken aback when I learn more about the delicate and intricate network which is me, in the aftermath of being plunged into that crazy disease, Necrotizing Fasciitis. We know a lot about the revealed complications and ramifications, which this eight-year blog discusses regularly. The psychological, more hidden repercussions, however, are much more subtle because they disguise themselves as a physical malady to be grappled with. I feel as if I have been enlightened tremendously by this episode. I hope that, if it happens again, I will be able to recognize it and talk to my body, telling it that we don't need to act out emotional triggers. We can just recognize them, and let them go. And move on into health.

About me and the blog

This blog is about the hard stuff that has happened to me since I got sick... very sick, in 2007. When you read it, please know also that there is lots and lots of GOOD, amazing, miraculous things in my life. I need this blog, however, to get out the hard stuff.
That hard stuff started out with a simple run-of-the-mill surgical procedure to fix a small hernia I had. I was completely healthy before that. Four days after the operation, I was readmitted to the hospital in tremendous pain. Nobody knew what was wrong, some nurses didn't even believe my pain was that bad. Tests were done, nothing was noticed. A few days later I was taken in for an exploratory surgery to see if the source of the problem could be identified.
The next thing I knew after going under for the exploratory surgery was that I woke up many days later, from a coma, completely unable to move my body or communicate.
I slowly learned that I almost died from the “flesh eating bacteria”, Necrotizing Fasciitis. I had suffered tremendous bodily damage, but survived.
From that point on, my life has been taken over by medical problems, more diseases, many more surgeries and so much pain.
When asked what I do, I say I am no longer able to work, but I am an orchestra musician, I play french horn, and I am a birth doula. Since 2008, however, I have not been able to work.
I am blessed to be able to raise my four beautiful children and continue life with my loving husband, Robert. That is indeed my life's work. When I got sick, I was 39, and my kids ranged in age from 1 + ½ to 7. It has been an amazing, tremendously difficult journey we have all been on. I invite you to randomly read blog entries from this blog, as well as the CaringBridge blog, which can be found on a button under this write-up.
I appreciate all your letters and feedback either personally or on my blog. The support and encouragement I feel from my readers is the fuel for my writing. I thank you for joining my journey!

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"footbridge", by Ruth Gresser

Getting from one side to the other is where we find the colorful part of living...

People, Places & Things

Robert= husband, friend, anchor, ezer k'negdo.

Dov= oldest child, boy variety

Ya'akov= 2nd child, also boy variety

Shifra= 3rd child, girl variety

Azriel (Wazi)= 4th child, again, boy variety

Emma= my dog. We adopted her while she was pregnant (how else does a dog get to Sarah?), she had her 7 puppies here in our garden, we raised them for 3 months, and then one-by-one gave them away to new homes. We have Emma with us now, a dearly beloved part of our family.

Gapey= the large (26cm x 13cm, or 11in. x 6in.) wound on my left upper thigh/lower belly/groin after the debridement surgery took out all skin layers, parts of muscle & ligament

Scrapey= the other wound; the area all around my right thigh where the skin was taken in rectangular patches for the graft which was used to close gapey.

Shapey= the odd shape on my left outer thigh which was caused by the cellulitis infection (March 2008). It is still damaged looking, and remains sore to the touch